Comments on: “Just look at them and you’ll understand.”

By: Fred Melamed

Fred Melamed — Tue, 23 Feb 2010 20:46:04 +0000

Thank you for your intelligence, wit and courage. It gives me hope. So much of Special Education is conceived to make life easier for those that provide it, not those who receive it. God bless you, and those like you.

-Fred Melamed, Actor, Film Maker, Father of two sons with autism.

By: ballastexistenz

ballastexistenz — Sun, 18 Mar 2007 20:36:12 +0000

If power problems could be solved only by people not wishing to have power, the world would be a lot simpler.

By: anon

anon — Sun, 18 Mar 2007 20:21:23 +0000

I work in special education and I honestly wish I could kick some of my peers asses. I work with kids. Kids with disabilities, yes, but just kids. Some like to dance. Some like to sing. Some like to play on the computer. Some bite me when they are angry. I try not to make them angry, but sometimes I miss when they are tired, stressed or just plain bored. I work with people who talk bout kids in front of their faces like they do not exist, and I cringe, and apologize later. Sometimes I just get mad. I take people to your blog in order to give them an idea of the amount of “possibility” my kids have- I hate to use that word, but I do believe that there are possibilities not being explored and limitations that are embraced, because it costs less, takes less energy and basically gives us the power—– but whatever. I work in a a state of balance, trying to do the good I can do, by enjoying the kids I work with, rather than expecting them to conform to sitting in a stupid desk all day, which is “proof” of inclusion. I “allow” kids who need to eat or drink to do so on their schedule. I have to answer to my boss for that. I laugh often and dance every day with my kids who love to dance. Because of that I am told that I am doing my job wrong.

Understand that SOME of us who work with kids with disabilities do not wish to be power brokers. Some of us truly enjoy kids in their various guises. Some kids are easier than others to “figure out” and it is our privelege to hang out with the “others” and see the world through their eyes.

Let me tell you a story- many years ago I worked with an autistic child who was in a mainstream school. Their day consisted of not talking to anyone but their aide- all communication was filtered through this person. They sat in the back of every regular English, math and computer class coloring teddy bears and doing rudimentary math. Because they were mostly quiet and compliant, they were deemed successful. When I worked with this kid I FREAKED. We did STUFF. We grew things in pots. We played real games. This kid started communicating with other teenagers for the first time. A year later this kid had their own greenhouse and supplied whatever was needed for whatever school event- and was “accepted” and celebrated for their achievements by their peers. (Not meant to sound condescending- believe me, the first time this kid said hi to a student in the hallway, you would have thought he had scored the winning touchdown in a football game there was so much joy.) This of course was after I told off a principal and then left my substitute position. (The two were exclusive, that was just the sequence- the principal eventually agreed with my idea that we build on strengths and interests and forget the easy sitting down coloring teddy bears crap.)

I just am unable to imagine myself being they type of person you describe, working with kids, and I hope that if I ever am, that I get the hell out of my job. While fighting for others takes a toll on my psyche, doing nothing seems like it would be even more soul sucking.

I hope I do not sound arrogant, either when i talk about what I do. I just want you to know that there are NT’s out there that do care, but they are often dismissed as bleeding hearts and often they just give up because they cannot see a way to make a meaningful difference without consequences. THey get burnt out, or just plaine burned by their supervisors and they leave. It is hard to be subversive every single day ———

I love your blog and I am so glad that I have read you.

By: ballastexistenz

ballastexistenz — Sat, 08 Jul 2006 07:52:22 +0000

If you have to. I’m not fond of the idea of giving trolls who may be watching one more easy way to find me, it would mean yet more stuff to moderate.

I’ve replied, though, to the totally jumbled version of my story that was given there. (Yes, I most definitely was diagnosed as autistic when I first got there, the “childhood schizophrenia” thing started almost a year later when I was transferred to a very strange facility, and my parents and I were basically all threatened with some pretty serious stuff until we appeared to agree with the concept. The diagnosis in adulthood was a re-diagnosis, not a first-diagnosis. My special ed records have both labels on them.)

By: Jannalou

Jannalou — Fri, 07 Jul 2006 23:54:13 +0000

Asking permission to post the link to your blog to ASA. One of the newer posters (a parent or a grandparent) has just posted the link to Getting the Truth Out, and was wondering some things about you (well, the author of the site).

By: GMAC

GMAC — Wed, 05 Jul 2006 17:48:06 +0000

Miss A-
I am most grateful for the Getting the Truth Out website. It moved me more than anything I have read, heard, or seen regarding autism and individuals in its embrace.
Thank you for correcting any mistakes I made in its interpretation.
I am also very thankful that you have gone out of your way to attempt to enlighten some very confused parents along the way.
From the very core of my being,
Thank You

By: Stef

Stef — Thu, 22 Jun 2006 17:10:24 +0000

Tying this back to your “eyeballs” post, I notice this:

If someone makes eye contact with you and you feel fear, that is made out to be your fault.

And if Erik Nanstiel look at a picture of you and all he can think about is “tragedy, crime, disability” and so forth — somehow that ends up being your fault too. I’d like to know: why is it your fault that his imagination is so limited? Why is it your fault that he feels fear when looking at a picture of you?

By: Not Mercury

Not Mercury — Thu, 22 Jun 2006 12:50:26 +0000

I’m afraid I haven’t had the time keep up with your blog lately, or many other blogs for that matter, but I knew I wanted to read this slowly and without skimming the way I often do. I managed to set aside the time to sit down and read this and now I want to say thank you. Thank you for this and for your blog but most of all for “Getting The Truth Out”

I know it probably wasn’t easy for you to give up anonymity so thank you for that as well. I wish I knew how to express myself as well as you but I don’t think there is anything else I’ve read recently that makes me think as much as what you write.

By: Ettina

Ettina — Thu, 22 Jun 2006 11:30:37 +0000

When I looked at the pictures on Getting the Truth Out I saw an obviously autistic person. Not an “empty” person, just someone who obviously had a lot in common with the various autistic kids I’ve met. I never saw them as empty either. It was obvious to me that there was so much going on in their minds. I didn’t necessarily know what they were thinking (though I understood them better than the NTs did) but I knew they were thinking. Similarly, the claim that animals don’t have emotions makes no sense to me. My cat is obviously grieving since my dog died. She hung around to watch the funeral and since then she’s been cuddling with us a lot, and just generally seems sad. It’s the same sort of thing. That picture of you looking at the blocks I interpreted as “autistic woman who likes to line up blocks”, not as “empty autistic staring at blocks” because it’s obvious you aren’t empty.
But I’ve learnt that discrimination requires turning off logical reasoning. For example, I wanted to do a monologue for my school about a lesbian, and was warned that if I did so people would assume I was gay (I’m actually asexual). That made no sense to me because the literature states that NTs develop the cognitive ability to understand pretending around 18 months, so wouldn’t they know that a person could pretend to be gay for a play? But apparently homophobia interferes with thinking logically about that scenario. Of course, that is no excuse for acting that way, just a possible explanation.
Another example is in the book Before and After Zachariah, Fern Kupfer, mother of Zach, mocks her husband saying something like the following:
“There is a reason for Zach’s crying. He’s hungry. He’s tired. He needs a diaper change. (He never says Zach cries because he’s severely brain damaged.) We know this: Zach never cries when we hold him and walk him.”
Obviously, Zach wants to be held and walked. That’s why he was crying, not “severe brain damage”! (Which technically wasn’t true, he actually had a recessive condition.)

By: ballastexistenz

ballastexistenz — Thu, 22 Jun 2006 08:47:36 +0000

If the person’s physical appearance fits any of a number of appearances that have become medicalized in and of themselves, I suspect we’re more likely to end up institutionalized. (Even before people were using specific syndrome-type words for it, “unusual facial features” or “unusual physical features” were phrases to be found in my medical records from institutions.)